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ORIGINAL ARTICLE
Year : 2017  |  Volume : 30  |  Issue : 3  |  Page : 755-760

Supportive aids for children with cerebral palsy


Department of Pediatrics, Faculty of Medicine, Menoufia University, Menoufia, Egypt

Date of Submission28-Jul-2016
Date of Acceptance02-Oct-2016
Date of Web Publication15-Nov-2017

Correspondence Address:
Fatma L Abdallah Farag
Department of Pediatrics, Faculty of Medicine, Menoufia University, Menoufia, 32511
Egypt
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/1110-2098.218268

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  Abstract 

Objective
The objectives of this study were to support families of children with cerebral palsy (CP), to improve their lifestyle, and decrease complications through effective interventions.
Background
CP is the most common physical disability of childhood with variable manifestations and comorbidities; many interventions are pursued to help children with CP.
Patients and methods
This study was conducted on 75 children with CP (37 males and 38 females), aged 2–15 years, with variable types, degrees, and severity of CP. They were selected randomly from an outpatient pediatric clinic of Menoufia University Hospitals. In the first 4 months, parents of these children were trained for solving difficulties of their children in weekly visits. Patients were evaluated at the end of these 4 months and then every 2 months to assess outcome; retraining was provided if needed.
Results
Our results showed prevalence of the following associated problems with CP: 84% had bowel incontinence, 80% had feeding difficulties, and 26.7% had convulsions. After following our training program, 60% showed adequate position and jaw stabilization during feeding, 46.7% became cooperative during feeding with shorter mealtimes, 34.5% developed bowel control by day time, 50% showed decreased frequency of convulsion attacks and reduced injury due to sudden attacks.
Conclusion
Conservative and behavioral modifications had positive outcomes in children with CP and their families through training parents for supportive aids.

Keywords: cerebral palsy, intervention, supportive


How to cite this article:
Abou El-Ella SS, Barseem NF, Abdallah Farag FL. Supportive aids for children with cerebral palsy. Menoufia Med J 2017;30:755-60

How to cite this URL:
Abou El-Ella SS, Barseem NF, Abdallah Farag FL. Supportive aids for children with cerebral palsy. Menoufia Med J [serial online] 2017 [cited 2020 Apr 5];30:755-60. Available from: http://www.mmj.eg.net/text.asp?2017/30/3/755/218268


  Introduction Top


Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, attributed to nonprogressive disturbances occurring in the developing fetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems [1].

Children with CP have complex healthcare needs and often require complex multidisciplinary care. It is important for clinicians to understand the approaches to healthcare service delivery for this population [2].

Therefore, it is beneficial for children with CP to receive services to improve their health, as well as solve associated difficulties. One way a child with CP can receive services is through an early intervention program, which is treatment provided to children who have developmental delay [3].

Caregivers play an important role in their child's life, especially because communication between a child with CP and the caregiver entails objectives that differ from typically developing children. Therefore, most intervention strategies are focused on child–caregiver interaction. Caregivers of children with CP can benefit from learning intervention techniques designed to support their children [4].

Our study was conducted to support families with children with CP and to train them how to deal with different difficulties that face their children.


  Patients and Methods Top


The present study was conducted on 75 patients (37 males and 38 females), aged 2–15 years, diagnosed with CP according to criteria of diagnosis of CP [5]; severity was assessed according to Gross Motor Function Classification System (GMFCS) [6]. Patients attending pediatric clinics at Menoufia University Hospitals during the period between March 2015 and April 2016 were eligible for participation.

According to age, patients were classified into the following groups:

  • <3 years (infants and toddlers) – 20 patients
  • 3 to <6 years (preschool age) – 23 patients
  • 6 to <12 years (school age) – 24 patients
  • ≥12 years (adolescents and young adults) – eight patients.


Informed consent was obtained from parents of all children enrolled in the study. Ethics approval was obtained for conducting this study from the Menoufia University Ethical Committee.


  Methods Top


    All children were subjected to the following.

  • Detailed history taking (antenatal, natal, postnatal, family, developmental, and past histories) with family pedigree reconstruction
  • Full clinical examination (general and systemic examination)
  • Anthropometric measurements (weight in kg, length/height in cm, head circumference in cm, and BMI); all measurements were plotted on CP growth charts
  • IQ assessment using the Stanford–Binet intelligence scale, 4th ed. [7]
  • Genetic counseling: good communication with parents and explaining how to apply appropriate intervention
  • Supportive aids.


Training stage

Mothers or caregivers were trained to decrease their child's difficulties during weekly visits for the first 4 months.

  • In the first visit, parents were taught about their child's disease and existing difficulties
  • In the second visit, we applied our training program, which was repeated during weekly visits, until we were sure that mothers understood and knew how to apply our training program. Retraining was provided if needed.


Evaluation stage

At the end of the fourth month of training, we assessed the progress of children every 2 months for 1 year. At the same time, children and their caregivers visited the clinic every week to share knowledge as well as help and supporting other families of children with CP.

Our training program assessed interventions for the following.

  • Feeding difficulties: we trained parents regarding good hygienic practices, providing a balanced nutritious diet, adequate food consistency, proper positioning for feeding, suitable feeding tools, and encouraged independent feeding
  • Locomotor disability: we trained mothers in simple maneuvers of physical therapy
  • Bowel control and bladder control were achieved in two steps
    1. First step: conservative management (behavioral modification including scheduled voiding and treatment for constipation)
    2. Second step: pelvic muscle exercise on biofeedback apparatus for selected patients
  • Management of convulsions: giving proper doses of anticonvulsant drugs at the right time to avoid injuries during sudden attacks
  • Some patients were referred for speech therapy and others for orthopedic surgery
  • Ten patients were selected for biofeedback therapy, aged 6 to ≥12 years; four of them did not continue therapy, and the remaining six patients underwent biofeedback therapy during weekly visits.


Patients were cooperative, with mild mental retardation, had intact anal sphincters, mild-to-moderate fecal incontinence, or stress incontinence not responding to simple dietary advice or medication.

Statistical analysis

Data were collected, tabulated, and statistically analyzed using SPSS 19.0 for windows (SPSS Inc., Chicago, Illinois, USA) and MedCalc 13 for windows (MedCalc Software bvba, Ostend, Belgium). Results are presented as means, ranges, SDs, and percentages, as appropriate. For comparing categorical data, the c2-test was used. A probability value of less than 0.05 was considered statistically significant [8].


  Results Top


This study was conducted on 75 children with CP. They were classified into the following four groups according to age: <3 years represented 20%, 3 to <6 years represented 40%, 6 to <12 years represented 25.4%, and ≥12 years represent 14.6% of the participants.

According to the GMFCS, grade V and grade III included 19 (25.3%) patients each, 18 (24%) patients were classified as grade II, 15 (20%) patients as grade I, and four (5.3%) patients were classified as grade IV patients [Table 1].
Table 1: The needed supportive aids in each age group studied

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In our study, we found that 69 patients required training for feeding difficulties, 63 patients had bowel movement difficulties, 66 cases suffered from speech difficulties, 20 patients had convulsions, 31 had recurrent chest infections, and 53 had constipation.

Caregivers were trained for solving their children's difficulties for 4 months; we then evaluated patients' improvements to assess the outcome of the training program at the end of the fourth month of training, and subsequently every 2 months.

Outcome of training for feeding difficulties

Thirty out of 75 (40%) patients showed adequate position during feeding and jaw stabilization at the first evaluation (at the end of the fourth month); the number increased to 45 (60%) patients at the third evaluation.

Among cooperative mothers of patients, 24 (32%) started to provide nutritious food to their children by the time of the first evaluation, leading to improvement in general health of children, decreased frequency of infection, and also encouraged other mothers to follow our training program, thereby increasing the number of patients to 41 (54.7%) by the third evaluation.

Improved mother–child contact increased child cooperation and decreased child distress during feeding, leading to shorter mealtimes. Eleven (14.7%) patients showed cooperation and shorter mealtimes at the first evaluation, which increased to 35 (46.7%) patients by the third evaluation [Table 2].
Table 2: Outcome of training for feeding

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Outcome of physiotherapy training

Mothers learnt how to apply physiotherapy at home; continuous physiotherapy led to improvements in the form of movement of both hands actively, sitting, standing with support, and walking without support in 40, 45.3, 38.7, and 26.7% of children, respectively [Table 3].
Table 3: Outcome of physiotherapy

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Patients who showed improvement had mild disabilities (severity according to GMFCS were levels I and II), but severe cases (levels IV and V) showed no obvious improvement. Mothers of such patients were not cooperative.

Outcome of toilet training

Fifty-five patients followed toilet training, with an age range of 3 to ≥12 years.

Twelve (21.8%) patients developed control of urine and stool by day time by the first evaluation using conservative management (behavioral modification and treatment for constipation); this increased to 15 (27.3%) patients by the second evaluation and 19 (34.5%) patients by the third evaluation.

Fifteen (27.3%) patients showed improvement with a reduced frequency of enuresis at the first evaluation, and the number increased to 23 (41.8%) patients by the third evaluation.

Among patients who received training for biofeedback apparatus use, three (5.5%) patients showed improvement with reduced frequency of encopresis at the first evaluation, which increased to six (10.9%) patients by the third evaluation. Among all, 27 patients showed no improvement as they had severe disabilities and severe mental retardation [Table 4].
Table 4: Outcome of toilet training

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Outcome of training for management of convulsions

Among our patients, 20 had convulsions. After training their parents for management of convulsions, 75% of patients followed instructions by taking anticonvulsant drugs at the proper time at the right dose, decreasing the number of attacks of convulsions and injury [Table 5].
Table 5: Outcome of training for management of convulsions

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  Discussion Top


Children with CP have complex healthcare needs and often require complex multidisciplinary care [2]. Most intervention strategies are focused on child–caregiver interaction, as caregivers play an important role in their child's health. Reid et al. agree that caregivers of children with CP can benefit from learning intervention techniques designed to support their child [4].

Caregivers were trained to solve their children's difficulties for 4 months during weekly visits. We evaluated patients regarding their improvements and assessed outcomes of the training program, and mothers experienced their child's desire for feeding by either verbal or other responses such as crying. Regarding the training program for feeding difficulty, 60% showed adequate positioning during feeding and jaw stabilization, besides sensorimotor stimulation of oral muscles.

Redstone and West [9] agree that postural control is very important to improve swallowing and feeding. Therefore, parents should be instructed about how to position their child for safe swallowing.

Among cooperative mothers of patients, there were 32% who started to give nutritious food to their children by the first evaluation, leading to improvement in general health of children, decreased frequency of infection, which encouraged more mothers to follow our training program. Therefore, the number of our patients increased to 41 (54.7%) by the third evaluation.

According to the study performed by Clawson and colleagues, children who have CP have been shown to benefit from behavioral interventions, oral motor exercises, and parent education. Caregivers were provided with training. Training included education regarding food preparation and appropriate nutrition. This intervention strategy improved behaviors of oral intake, mealtime skills, mouth opening, consuming more food, increased oral intake among children, and increased transit time to swallow. Children's negative behaviors decreased, including reduction in inappropriate responses and longer mealtimes [10].

Our study revealed that poor feeding skills were significantly high in patients of GMFCS V; their parents showed no active participation and their attendance was not regular.

Previous studies have shown that there is a significant correlation between severity of motor impairment reported and a range of feeding problems. Children unable to walk or who required an aid and helper to walk were more likely to have problems with eating and swallowing lumpy food and needed food mashing or liquidizing, which was relevant to our study [11].

Similar finding were reported by Liptak [12], who revealed that children of GMFCS level V and with severe feeding difficulties, living in a well-resourced country, required the most healthcare resources, used the most medications, had the most respiratory problems, and had the lowest Global Health scores compared with the rest of the study population.

In relation to the type of CP, highest inadequate response was attained in spastic quadriplegic CP who represented 13.3% of children; therefore, adequate time, type, and texture of presented food are advised in coordination.

Regarding outcome of training for physiotherapy, most of the mothers learnt how to apply physiotherapy at home. Continuous physiotherapy led to improvements in movement of both hands actively, sitting, standing with support, and walking without support in 40, 45.3, 38.7, and 26.7%, respectively.

Similar findings were detected in a study performed on CP children, where home programs for improving motor activity performance or self-care and fitness training are beneficial only as long as training continues. Exercise programs are only effective in individuals who have sufficient motor skills to permit participation [13].

The prognosis of this problem depends on early intervention, degree of severity, and cooperation of parents [14].

With regard to toilet training, 19 (34.54%) out of 55 patients developed control of urine and stools by day time by the third evaluation; 23 (41.8%) patients showed improvement with reduced frequency of enuresis by the third evaluation, and six (10.9%) patients showed improvement with reduced frequency of encopresis by the third evaluation. Among those who received training for biofeedback apparatus, 27 patients showed no obvious improvement – they were noticed to have severe disabilities and severe mental retardation.

Retrospective studies carried out by Thom and colleagues showed reduction in symptoms in ~40–70% of patients treated conservatively. Conservative management is generally the initial approach to treating children with bladder dysfunction. It primarily involves voiding behavior modification including timed voiding schedules and treatment for constipation, if present [15].

In another retrospective study of conservative therapy (i.e., timed voiding, modification of fluid intake, and pelvic floor muscle exercises), symptom improvement was seen in 48 of 74 children, including improved day time urinary control, reduction in episodes of frequency and urgency, and a decrease in the rate of urinary tract infections [16].

In our study, 10 patients were selected for biofeedback therapy, aged 6–14 years; four of them did not continue with therapy and only six patients underwent biofeedback therapy during weekly visits. Patients were selected to be cooperative, with mild mental retardation, intact anal sphincters, and mild-to-moderate fecal incontinence or stress incontinence, who had not responded to conservative management.

Nepple KG and Cooper CS agree that biofeedback is reserved for children with bladder and sphincter dyssynergia, contributing to persistent day time incontinence despite an adequate trial of conservative therapy and/or pharmacotherapy. It is also used for children with significant postvoid residuals who have recurrent urinary tract infections and constipation [17].

In our study, we observed that the age for achieving bladder and bowel control was higher in children with CP than in healthy children, and this finding was the same as that reported by Ozturk et al. [18], who demonstrated that children with moderate and severe mental retardation achieve bowel control at a significantly older age than healthy children, although no such difference was found for children with mild mental retardation.

Considering management of convulsions, in our study, patients had anticonvulsant medications at the proper time and dose, and showed deceased attacks of convulsions and child injuries.

Novak et al. [3] reported that anticonvulsant medications to prevent seizures improved seizure control. An early intervention with treatment of epilepsy prevents further progression of neuronal injury, with subsequent cognitive impairment caused by uncontrolled seizures among those patients [19].

In our study, we found that continuous scheduled training programs had a positive impact on children with CP and their families. The prognosis of patients with different problems depended on early interventions, degree of severity of CP, cooperation, and education of parents.

Jeglinsky and colleagues agree that delivery of care for children with CP has been associated with positive outcomes for children with CP and their parents. For children, there is improved health, development, and better psychosocial adjustment and functioning. For parents, there is improved emotional and psychological well-being and improved sense of personal confidence and competence [20].


  Conclusion Top


Establishing an integrated family role through easy, adapted intervention programs and availability of rehabilitation centers are important for improving lifestyle and general health of children with CP.

Acknowledgements

This study was funded by National Liver Institute, Menoufia University, Egypt.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
  References Top

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Thom M, Campigotto M, Vemulakonda V. Management of lower urinary tract dysfunction: a stepwise approach. J Pediatr Urol 2012; 8:20.  Back to cited text no. 15
    
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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5]



 

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